Sunday, December 13, 2009

Dante's Inferno - 2nd Opinion Hell

I posted a few weeks back that my cancer team suggested a chemo break and that I am a candidate for Theraspheres. I met with radiologist and it was a frustrating session and I didn't feel he was able to "sell" me on the efficacy of the treatment, if it was a good next step etc. I was under the impression it is my only available targeted therapy to try at this point

I meet with Dr. Benson, oncologist at Northwestern - they say chemo should be continued, Theraspheres not recommended 1)not enough stats that it would "prolong life" and chemo has more evidence of that and 2) my tumors aren't vascular- that people tend to do better on targeted therapies if there tumors are vascular/lots of blood supply. It is also mentioned that, contrary to my current cancer team (onco, surgeon etc) that I AM looking like a candidate for liver surgery.

As exciting as that sounds - and Northwestern surgeon emphasizes that surgery is "the cure" to my disease, my current team has yo-yo'd on surgery and it's currently off the table. Add to that, Northwestern says that there is an optimum window of time to have surgery, when I'm on chemo break (I JUST re-started chemo this week) due to toxicity etc...

So now what do I do? I need to consult with surgeons at Northwestern for detailed opinion I go back to my original surgeon and share info? Now, does it come down to each surgeon's skill and ability, not just if I am a candidate? Until I know that Northwestern surgeons have thoroughly evaluated my PET Scan, I will not assume I am resectable right now. From my research, it appears that optimally, there are 4 or less tumors on the liver, though a very skilled surgeon may take on a case with more tumors.

I have a lot of tumors, don't know the number - though the Pet Scan in early November revealed that they weren't real "hot", several were "calcified" and not super active. That may be a factor in ability to do surgery, I'm guessing.

How do you decide? Dr. Miller, a dear friend of my family set the ball in motion for me to get an appt. with Dr. Yuman Fong- liver surgeon at Sloan Kettering, said to be the best....well, I was toltally screened out by my initial call however, Dr. Miller emailed Dr. Fong about my case and got a response that I should call directly for an appt- hopefully the number he gave is behind the Hospital's Great Wall of China/appt Screening Police.

How the heck are we to make decisions on our treatment when answers are so diverse????

there's sooo much more I could write about everything swirling around this next phase right now, but you'd be here for hours...will keep you posted.




  1. I'll pray for you, for wisdom and discernment.

  2. I echo the comment above-- I will pray that wisdom and discernment come to you and come fast-- and that the phone call gets you right to where you need to be.
    Peter Tedeschi

  3. The decisions seem to go on and on. What to do? Oh Peg i feel so helpless on all these opened doors with not knowing which one to shut and which one to SLAM!

    I must just continue being in prayer and hope the Big Guy gives you a true answer for the right door.


  4. Peg,

    You are doing all the right things!! Keep asking the questions. "Keep on keeping on" as they say. You are your best health advocate! Sometimes you have to swim against the current. Sometimes you have to piss people off. Sometimes you have to "step out of the box," so to speak. Don't let them keep you behind the Great Wall of China/Screening police. Keep calling until you get an answer. If you are up to it - ask your network of friends and family to "bombard" you with our research, articles and any connections. I found my surgeon through a girlfriend/nurse who talk to a doctor in Colorado who I have never met who did some research on my behalf who then called a surgeon in Texas and asked him to see me. Love ya and always thinking of you. Brig

  5. I agree with all of your angels posts prior - I will pray for wisdom and guidance, and for Dr. Fong's gatekeepers to be on break when you call ♥

    Love you and thinking of you every day xoxo